11 yrs with PD

Hi all, Not been on here for some time now. My husband is 11 yrs diagnosed and been on lots of meds over the years, he seemed to do ok dealing with most things kept driving and going on holidays etc.

After a very stressful 2 yrs, my husband started to have hallucinations but would accept it was his meds that were the cause. Then after going on a 2nd additional patch rivastigmine 9.5 (apparently to help with the hallucinations) he eventually had more vivid visions and became very delusional believing all he could see.

He had a couple of bad falls about a month ago and refused to be checked out. Something has changed him dramatically he has deteriorated so much since these incidents.

He can’t stand up without trying over and over again, he can’t walk across the room without losing his balance, he can’t bend to reach something without falling, he doesn’t seem to have much of a appetite recently.
Memory loss, forgetfulness, and asking the same things over and over again.
I noticed for some time now the urgency for when he needs a pee its got to be immediate, he pees everywhere except into the actual toilet bowl.

He has a private neurologist who is a long drive away, and since giving up driving he can’t get to see him easily. He has had this same Neurologist who diagnosed him 11 years ago.

I contacted his Neuro by email to tell him how my OH was deteriorating, he said that he may have a UTI or other infection and that he needed a urine test, Chest exam, and a ECG.

When his GP examined him, his blood pressure was very low so he was taken off his BP meds, on the urine dipstick test showed Nitrates in his urine, no blood or protein. the GP said they were not sure if the nitrates were due to his meds, so the test was sent off for full test results.

In the meantime, his Neuro had said that he is to be put on anti-biotics straight away if there was any suspicion in the urine dipstick test.
My OH GP said this is not right he shouldn’t be going on ABs in case there’s no infection and that we should wait for results, but his Neuro insisted that he started them without delay. his GP said there was no point and didn’t make any sense.

His Neuro is going to up his rivastigmine patch to 13mg and introduce a new med for paranoia.
Apologies for the long-winded case, I’m so worried and dont know what to do, I am beginning to wonder if this is the beginning of the end, I’m even wondering if my OH has had a stroke but his neuro hasn’t mentioned anything like that.

Can PD symptoms change so quickly and dramatically, his Neuro said when he last saw my husband 3 months ago he was happy with him and he needs to rule out infection because he shouldn’t have changed with his symptoms so quickly.

I am out of my mind, and my husband is just all over the place don’t know where to go from here.

Any opinions or advice will be more than welcome thank you all xxx

Hi, You don’t say what other medication he is on other than the Rivastigmine, is he on a Dopamine Agonist as well? The Rivastigmine can cause some of the symptoms you are describing ie Falls, confusion, hallucinations, nightmares, urine infections, incontinence and movement disorders, is it actually this medication making him worse? My Husband was on a Dopamine Agonist and started hallucinating that was gradually reduced and now he is off it altogether and they have just about gone, we find if he has less meds he seems more with it, the down side is his mobility decreases. Quite a few of the Parkinsons meds can cause confusion and increased movement disorders which is odd when you think PD is a movement disorder and the rationale behind the meds is surely to allieviate PD symptoms. My husband has had quite a number of falls this year and he takes quite some time to recover from each one of them but never seems to get back to his baseline. In our experience PD can escalate usually due to a trigger like a fall/s or infection and can then take quite some time to make a recovery. Why don’t you ring the Parkinsons Helpline, they are very knowlegable. Best Wishes.

Thank you for responding to my post I really appreciate it.
He is on madapar, Stalevo,amantadine, neuro patch and ravgisine patch am

Amantadine, Stalevo lunch time

More Stalevo at 5pm and 7pm

Entecopone, azelect, leva dopa, and clomazepan 10pm

His deterioration seems to have come about in the past 3 weeks after a few falls within a couple of days of each other.
His meds have been the same for many years, except for the Ravagistine patches are his most recent new drug.
He seemed ok for a while, but now he’s totally confused can’t remember anything, asking me to switch lights in for him because he can’t remember where they are.

His hallucinations are in the home now as well as outside, there’s people in the lounge, people in the garden, he describes them individually what they are wearing etc.

I love my OH very much and just want to do what’s best for him

I can’t see a urine infection causing all this utter confusion.

Thanks again

Hi, Entacapone is a Dopamine Agonist and they can cause confusion and hallucinations which is why my husband was taken off the Dopamine Agonist, different one to Entacapone, I’m surprised they haven’t suggested reducing it down to eventually stop it, it can’t be suddenly stopped has to be tapered off, it was the first thing they suggested to us. Urine Infections can cause considerable confusion in elderly people as well, could you get a urine sample for the GP? If I was you I would telephone your Parkinsons Team and ask if it could be the Entacapone, in addition the Rivastigmine can cause the same so they need to be looking at his meds to see if it could be them causing the issue. Usually a GP will get involved with the symptoms you are describing because they are a serious concern, ring your GP as well as the Hospital Parkinsons Team. I know how worrying it is to see such a change, I’ve been through it recently and its quite distressing. I also rang the Parkinsons UK Helpline. Best Wishes.